%0 Journal Article %C The Sahlgrenska Academy at Goteborg University Institute of Health and Care Sciences, Goteborg, Sweden %A Fridh, I %A Forsberg, A %A Bergbom, I %J Acta Anaesthesiol Scand %D 2007 Apr %N 4 %P 395-401 %T Family presence and environmental factors at the time of a patient's death in an ICU %V 51 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17378776 %X Background: In an intensive care unit (ICU), privacy and proximity are reported to be important needs of dying patients and their family members. It is assumed that good communication between the ICU team and families about end-of-life decisions improves the possibilities of meeting families' needs, thus guaranteeing a dignified and peaceful death in accordance with end-of-life care guidelines. The aim of this study was to explore the circumstances under which patients die in Swedish ICUs by reporting on the presence of family and whether patients die in private or shared rooms. An additional aim was to investigate the frequency of end-of-life decisions and whether nurses and family members were informed about such decisions. Methods: A questionnaire based on the research questions was completed when a patient died in the 10 ICUs included in the study. Data were collected on 192 deaths. Results: Forty per cent of the patients died without a next of kin at the bedside and 46% of deaths occurred in a shared room. This number decreased to 37% if a family member was present. Patients without a family member at their bedside received less analgesics and sedatives. There was a significant relationship between family presence, expected death and end-of-life decisions. Conclusions: The results indicate the necessity of improving the ICU environment to promote the need for proximity and privacy for dying patients and their families. The study also highlights the risk of underestimating the needs of patients without a next of kin at their bedside at the time of death %0 Journal Article %C Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center and the University of Pennsylvania, Philadelphia, Pennsylvania, USA. casarett@mail.med.upenn.edu %A Casarett, David J %A Quill, Timothy E %J Ann Intern Med %D 2007 Mar %N 6 %P 443-9 %T "I'm not ready for hospice": strategies for timely and effective hospice discussions %V 146 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371889 %X Hospice programs offer unique benefits for patients who are near the end of life and their families, and growing evidence indicates that hospice can provide high-quality care. Despite these benefits, many patients do not enroll in hospice, and those who enroll generally do so very late in the course of their illness. Some barriers to hospice referral arise from the requirements of hospice eligibility, which will be difficult to eliminate without major changes to hospice organization and financing. However, the challenges of discussing hospice create other barriers that are more easily remedied. The biggest communication barrier is that physicians are often unsure of how to talk with patients clearly and directly about their poor prognosis and limited treatment options (both requirements of hospice referral) without depriving them of hope. This article describes a structured strategy for discussing hospice, based on techniques of effective communication that physicians use in other "bad news" situations. This strategy can make hospice discussions both more compassionate and more effective %0 Journal Article %A Lebon, Beata %A Beynon, Teresa A %A Whittaker, Sean J %J Arch Dermatol %D 2007 Mar %N 3 %P 423-4 %T Palliative care in patients with primary cutaneous lymphoma: symptom burden and characteristics of hospital palliative care team input %V 143 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17372114 %0 Journal Article %C Centre for Child and Family Studies, Leiden University, The Netherlands. vanijzen@fsw.leidenuniv.nl %A Van Ijzendoorn, Marinus H %A Bakermans-Kranenburg, Marian J %J Attach Hum Dev %D 2006 Dec %N 4 %P 291-307 %T DRD4 7-repeat polymorphism moderates the association between maternal unresolved loss or trauma and infant disorganization %V 8 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17178609 %X Previous studies have related attachment disorganization in children to either dopamine D4 receptor polymorphisms or maternal unresolved loss or trauma and frightening or anomalous parenting. In this study it was examined whether the interaction between genetic (DRD4 7-repeat and -521 C/T) and environmental risk factors (maternal unresolved loss/trauma and maternal frightening behavior) was associated with infant disorganization. A moderating role of the DRD4 gene was found. Maternal unresolved loss or trauma was associated with infant disorganization, but only in the presence of the DRD4 7-repeat polymorphism. The increase in risk for disorganization in children with the 7-repeat allele exposed to maternal unresolved loss/trauma compared to children without these combined risks was 18.8 fold. Similar moderating effects were not found for maternal frightening behavior. Our findings indicate that children are differentially susceptible to unresolved loss or trauma dependent on the presence of the 7-repeat DRD4 allele %0 Journal Article %C Department of Psychiatry, University of Melbourne, Melbourne, Australia. s.bloch@unimelb.edu.au %A Bloch, Sidney %A Love, Anthony %A Macvean, Michelle %A Duchesne, Gill %A Couper, Jeremy %A Kissane, David %J Biopsychosoc Med %D 2007 %P 2 %T Psychological adjustment of men with prostate cancer: a review of the literature %V 1 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371571 %X ABSTRACT: OBJECTIVE: Prostate cancer (PCA) is the most common malignancy and a major cause of death in men but, importantly, a substantial proportion will live for several years following diagnosis. However, they face the prospect of experiencing symptoms, side-effects of treatment and diminished quality of life. The patient's psychological adjustment is particularly complex, given the potential trajectory of the disease, from the point of diagnosis, with its immediate impact, to the phase of palliative care, with its attendant issue of facing mortality. Since a comprehensive review of the literature on psychological adjustment of men with PCA has not yet been done, we have documented relevant research, integrated findings and drawn conclusions, where possible, in order to map out clinical and research implications. METHOD: We searched 5 databases for the period 1994 - July 2006, during which most of the work in the field has been done. RESULTS: We found few studies of substance among the 60 we examined to draw conclusions about psychological adjustment to prostate cancer and its treatment. This is in marked contrast to the picture in breast cancer. While some patterns have emerged, many gaps remain to be filled. DISCUSSION: Aspects of methodology need attention, particularly longitudinal, prospective designs, incorporation of control groups and the use of valid and reliable measures. There is scope for qualitative studies as a complement to quantitative research %0 Journal Article %C Department of Psychology, University of Missouri-St. Louis, St. Louis, MO, USA. marwits@umsl.edu %A Marwit, Samuel J %A Kaye, Peggy N %J Brain Inj %D 2006 Dec %N 13-14 %P 1419-29 %T Measuring grief in caregivers of persons with acquired brain injury %V 20 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17378234 %X PRIMARY OBJECTIVE: To investigate the psychometric and validity properties and applicability of a modified version of the Marwit-Meuser Caregiver Grief Inventory (MM-CGI) for use with caregivers of patients with acquired brain injury (ABI). RESEARCH DESIGN: Replicate Marwit and Meuser's original psychometric study assessing grief in caregivers of dementia patients. METHODS AND PROCEDURES: The MM-CGI was administered to 28 ABI caregivers along with standardized measures of caregiver strain, depression, well-being and family support. MAIN OUTCOMES AND RESULTS: Results for ABI caregivers were similar to those for dementia caregivers with the instrument demonstrating excellent internal consistency reliability for total and sub-scale grief scores and strong divergent validity. Results also parallel those of a recent study of cancer caregivers. CONCLUSIONS: The MM-CGI is as useful for diagnosing and treating grief in ABI caregivers as it is for those caring for persons with other serious illnesses %0 Journal Article %C tray@traydunway.com %A Dunaway, M Tray %J Caring %D 2007 Feb %N 2 %P 56 %T A home care and hospice carol %V 26 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17370904 %0 Journal Article %C jen@nahc.org %A Neigh, Janet E %J Caring %D 2007 Feb %N 2 %P 50-1 %T CMS begins to gather more hospice data %V 26 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17370901 %0 Journal Article %C Department of Internal Medicine, Division of Pulmonary and Critical Care, Third Affiliated Hospital of Sun Yat-sen University, Guangzhou 510630, China (Email: huiliu_sums@yahoo.com.cn) %A Liu, Hui %A Zhang, Tian-Tuo %A Ye, Jin %J Chin Med J (Engl) %D 2007 Feb %N 4 %P 287-93 %T Analysis of risk factors for hospital mortality in patients with chronic obstructive pulmonary diseases requiring invasive mechanical ventilation %V 120 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17374279 %X BACKGROUND: Accurate prediction for prognosis is important for hospitalized patients with chronic obstructive pulmonary disease (COPD) requiring invasive mechanic ventilation (IMV) and for their family members to make end-of-life decisions. The response to therapy in such a patient population has rarely been investigated. The aim of the study was to evaluate the risk factors in these patients and investigate their response to IMV and the relationship between their responses and prognosis. METHODS: A cohort of 138 patients with COPD requiring IMV = 12 hours for acute respiratory failure of diverse etiological factors during a 4-year period were retrospectively studied using prospectively gathered data. All variables potentially related to hospital mortality were evaluated by univariate and multiple stepwise logistic regression analysis. RESULTS: The mean age of all patients investigated was (65.7 ± 11.6) years and the hospital mortality was 39.9% (31.1% with COPD exacerbation). Correction of acidosis (pH = 7.30) was seen in 58 patients (69.9%) in survivors but only 12 patients (21.8%) in nonsurvivors (P < 0.05) after ventilation. Using multivariate logistic analysis, the variables independently associated with hospital mortality were a higher acute physiology score before intubation, lower pH value measured 24 hours after the onset of ventilation and development of multiorgan dysfunction syndrome (MODS). CONCLUSIONS: In COPD patients requiring IMV, the postintubation pH value can not only reflect patients' response to treatment, but also serve as an independent determinant of hospital mortality apart from other risk factors such as a higher preintubation APACHE II score and development of MODS. A close correlation between the response to IMV and prognosis was proved in these patients %0 Journal Article %C Professor, Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA %A Bruera, Eduardo %J Clin Adv Hematol Oncol %D 2007 Jan %N 1 %P 29-31 %T Managing cancer-related symptoms: advances in supportive oncology %V 5 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17339823 %0 Journal Article %C Clinical Nutrition, Geneva University Hospital, 1211 Geneva 14, Geneva, Switzerland %A Marin, Caro MM %A Laviano, A %A Pichard, C %J Clin Nutr %D 2007 Mar %T Nutritional intervention and quality of life in adult oncology patients %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17368656 %X The evaluation of quality of life (QoL) assesses patients' well-being by taking into account physical, psychological and social conditions. Cancer and its treatment result in severe biochemical and physiological alterations associated with a deterioration of QoL. These metabolic changes lead to decreased food intake and promote wasting. Cancer-related malnutrition can evolve to cancer cachexia due to complex interactions between pro-inflammatory cytokines and host metabolism. Beside and beyond the physical and the metabolic effects of cancer, patients often suffer as well from psychological distress, including depression. Depending on the type of cancer treatment (either curative or palliative) and on patients' clinical conditions and nutritional status, adequate and patient-tailored nutritional intervention should be prescribed (diet counselling, oral supplementation, enteral or total parenteral nutrition). Such an approach, which should be started as early as possible, can reduce or even reverse their poor nutritional status, improve their performance status and consequently their QoL. Nutritional intervention accompanying curative treatment has an additional and specific role, which is to increase the tolerance and response to the oncology treatment, decrease the rate of complications and possibly reduce morbidity by optimizing the balance between energy expenditure and food intake. In palliative care, nutritional support aims at improving patient's QoL by controlling symptoms such as nausea, vomiting and pain related to food intake and postponing loss of autonomy. The literature review supports that nutritional care should be integrated into the global oncology care because of its significant contribution to QoL. Furthermore, the assessment of QoL should be part of the evaluation of any nutritional support to optimize its adequacy to the patient's needs and expectations %0 Journal Article %C Department of Radiation Oncology, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada. andrew.loblaw@sunnybrook.ca %A Loblaw, D A %A Holden, L %A Xenocostas, A %A Chen, E %A Chander, S %A Cooper, P %A Chan, P C %A Wong, C S %J Clin Oncol (R Coll Radiol) %D 2007 Feb %N 1 %P 63-70 %T Functional and pharmacokinetic outcomes after a single intravenous infusion of recombinant human erythropoietin in patients with malignant extradural spinal cord compression %V 19 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17305256 %X AIMS: To determine the cerebrospinal fluid concentrations and the functional and pain outcomes after a single intravenous infusion of erythropoietin at the start of a standard radiotherapy and steroid protocol. MATERIALS AND METHODS: Ten paraparetic patients with malignant extradural spinal cord compression who were eligible for radiotherapy, lumbar puncture and intravenous epoetin alpha were enrolled. The patients received epoetin alpha 1500 IU/kg intravenously over 30 min followed by a standardised dexamethasone and radiotherapy protocol. A lumbar puncture and venipuncture were carried out 24-30 h after the epoetin alpha infusion. The patients were followed closely at defined intervals. RESULTS: Erythropoietin was detectable in the cerebrospinal fluid in all eight patients sampled (median 92.5 mIU/ml, range 17.8-214.0 mIU/ml). Before treatment, eight patients were non-ambulatory and two patients were ambulatory with assistance. After treatment, eight (80%, 95% confidence interval [CI] 44-97%) improved at least one functional class and recovered or maintained ambulation. Five of seven patients (71%; 95% CI 29-96%) with objective sensory deficits and one of seven (14%; 95% CI 0-58%) catheter-dependent patients recovered. Overall, 78% (95% CI 40-97%) had a pain response. CONCLUSIONS: After an intravenous infusion of epoetin alpha, radiotherapy and steroids, high concentrations of erythropoietin were detectable in the cerebrospinal fluid. Patients with malignant extradural spinal cord compression showed encouraging improvements in neurological function and pain %0 Journal Article %A Conway, R %A Graham, J %A Kidd, J %A Levack, P %J Clin Oncol (R Coll Radiol) %D 2007 Feb %N 1 %P 56-62 %T What happens to people after malignant cord compression? Survival, function, quality of life, emotional well-being and place of care 1 month after diagnosis %V 19 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17305255 %X AIMS: To present further findings from the Scottish Cord Compression Study, in which the diagnosis, management and outcome of 319 patients with a definitive diagnosis of malignant cord compression (MCC) were examined. MATERIALS AND METHODS: In total, 256 (80%) patients in the study consented to be interviewed shortly after diagnosis and at follow-up interviews. One hundred and twenty-eight patients were interviewed 1 month after diagnosis (40% of the total; 57% [128/224] of patients alive 1 month after diagnosis; 68% [128/188] of patients who also consented to follow-up). Survival data of the whole MCC population and data from interviewing 128 patients 1 month after diagnosis are presented. RESULTS: The median survival of all patients was 59 days (95% confidence interval [CI] 43-75 days). The median Karnofsky performance status was 50 (interquartile range 40-60), indicating a need for considerable nursing and medical care, and was poorest for patients with lung cancer (median 40; interquartile range 30-60). The place of care was dependent on mobility at diagnosis; patients walking at diagnosis were more likely to be at home, whereas patient requiring assistance or who were unable to walk were more likely to be in institutional care (P = 0.019). Mobility and bladder function were determined by mobility and bladder function at diagnosis (P < 0.001). Of those unable to walk at diagnosis, 7% regained full mobility. Of those catheterised at presentation, 28% regained full bladder function. Forty-seven per cent (56/120, 95% CI 40-54) of patients interviewed were in pain despite oncological treatment and 18% (22/ 120; 95% CI 8-19) reported the pain as severe (visual analogue scale > 7). The median quality-of-life (Schedule for Evaluation of Individualised Quality of Life) score was 72/100, and was higher in patients with a better performance status (P = 0.026). A minority of patients (8%) screened positive for anxiety and depression using the Hospital Anxiety and Depression scale. CONCLUSIONS: Notwithstanding the difficulties in following up this group of patients, this paper reports valuable findings detailing the experience of patients with MCC 1 month after diagnosis and treatment %0 Journal Article %C Westside Anesthesiology Associates of Rochester, LLP, Rochester, NY 14626-1176, USA; Critical Care and Medicine, Unity Health System, 1555 Long Pond Road, Rochester, NY 14626, USA; Lakeside Health System, 156 West Avenue, Brockport, NY 14420, USA; Brown and Tarantino, LLC, Attorneys at Law, Rochester, Buffalo and White Plains, NY, USA %A Szalados, JE %J Crit Care Clin %D 2007 Apr %N 2 %P 317-337 %T Discontinuation of Mechanical Ventilation at End-of-Life: The Ethical and Legal Boundaries of Physician Conduct in Termination of Life Support %V 23 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17368174 %X End-of-life care in the ICU generally encompasses both the withholding and withdrawal of life support and the administration of palliative care. There is little practical distinction in the specific technology or life-support modality that is limited or removed with respect to the subsequent medical, ethical, or legal analysis. The important ethical issues pertinent to end-of-life care in the ICU at the point-of-life support discontinuation are: (1) the distinction between allowing patients to die in accordance with their wishes and causing them die, (2) the fine line between respecting a patient's wish to die with dignity and control and the risk of subsequent allegations of euthanasia or physician-assisted suicide, and (3) the adjunctive use of medications that simultaneously provide comfort but also may hasten death. The medical and legal issues are summarized, and an algorithm for the discontinuation of mechanical ventilatory support at the end of life is presented %0 Journal Article %C Prevention Research Center, Department of Psychology, Arizona State University, Tempe, Arizona, USA %A Brown, Ana C %A Sandler, Irwin N %A Tein, Jenn-yun %A Liu, Xianchen %A Haine, Rachel A %J Death Stud %D 2007 Apr %N 4 %P 301-35 %T Implications of parental suicide and violent death for promotion of resilience of parentally-bereaved children %V 31 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17378109 %X This article considers the implications of suicide and violent deaths (including suicide, homicide, and accidents) for the development of interventions for parentally bereaved children. Analyses of data from the Family Bereavement Program find minimal differences in children's mental health problems, grief or risk and protective factors based on cause of parental death. In addition, cause of death did not substantially affect the relations between risk and protective factors and bereaved children's outcomes. It is concluded that cause of death from violence or suicide is not a very useful indicator of bereaved children's need for or likelihood of benefiting from an intervention %0 Journal Article %C College of Nursing, University of Alabama at Huntsville, 301 Sparkman Drive, Huntsville, Alabama 35899, USA. linda.riley@uah.edu %A Riley, Linda P %A LaMontagne, Lynda L %A Hepworth, Joseph T %A Murphy, Barbara A %J Death Stud %D 2007 Apr %N 4 %P 277-99 %T Parental grief responses and personal growth following the death of a child %V 31 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17378106 %X Conceptualizing parental grief as a psychosocial transition, this cross-sectional study of bereaved mothers (N = 35) examined the relationship of dispositional factors, grief reactions, and personal growth. More optimistic mothers reported less intense grief reactions and less distress indicative of complicated grief. Additionally, mothers who usually coped actively had less intense grief reactions. Mothers who habitually coped using positive reframing had less intense grief reactions and less complicated grief. Personal growth, a positive dimension of grief, was associated with all three coping dispositions; mothers' active coping, support seeking, and positive reframing suggesting more personal growth occurred in mothers exhibiting more of these coping dispositions. These findings increase understanding of dispositional factors associated with bereaved mothers' grief responses and expand knowledge concerning personal growth as an outcome of bereavement %0 Journal Article %A Weigl, Daniel M %A Arbel, Nili %J Dev Med Child Neurol %D 2007 Feb %N 2 %P 159-60 %T Why do children with cerebral palsy discontinue therapy with botulinum toxin A? %V 49 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17297747 %0 Journal Article %C Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA 98103, USA. shlastal@u.washington.edu %A Hlastala, Stefanie A %A Frank, Ellen %J Dev Psychopathol %D 2006 Fall %N 4 %P 1267-88 %T Adapting interpersonal and social rhythm therapy to the developmental needs of adolescents with bipolar disorder %V 18 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17064438 %X Interpersonal and social rhythm therapy (IPSRT) is a manual-based adjunctive psychotherapy specific to the treatment of bipolar disorder. This paper reviews the theoretical rationale and empirical evidence for the efficacy of IPSRT in combination with pharmacotherapy for adults with bipolar I disorder. We then provide an overview of the developmental modifications being made to IPSRT to increase its relevance to adolescents with bipolar disorder %0 Journal Article %C Hannover Medical School, Department of Epidemiology, Social Medicine and Health System Research, Carl-Neuberg-Str. 1, D-30625 Hannover, Germany %A Schneider, N %A Dreier, M %A Amelung, V E %A Buser, K %J Eur J Cancer Care (Engl) %D 2007 Mar %N 2 %P 172-7 %T Hospital stay frequency and duration of patients with advanced cancer diseases - differences between the most frequent tumour diagnoses: a secondary data analysis %V 16 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371427 %X The differences in the number and duration of hospital stays of cancer patients in an advanced stage of disease were to be examined with regard to the most frequent cancer diagnoses. Therefore, routinely compiled data of the largest health insurance company in the State of Lower Saxony, Germany, were analysed. Patients with lung, colon, breast and prostate cancer were included, who died in the year of 2004. The parameters of frequency (case numbers) and duration (days) of inpatient hospital stays were examined for the 5-year period of 2000-2004, with special focus on the years 2003/2004. 355 patients were included. On average, the number of inpatient hospital stays amounted to 2.7 cases and 29 days per patient. 87.5% of the hospital stays within the study period occurred in 2003/2004. The patient groups differed significantly both in the average number of cases and in the duration of hospital stays (Kruskal-Wallis test: P < 0001), whereby patients with lung cancer underwent inpatient hospital treatment most frequently (3.3 times), and for the longest periods (35 days). This study shows that patients in an advanced stage of lung cancer are a particular important target group for reducing hospitalization at the end of life. They should receive special attention when structures of palliative care are extended %0 Journal Article %C Central Queensland University - International Program for Psycho-Social Health Research, Brisbane, Queensland, Australia %A McGrath, P %A Holewa, H %J Eur J Cancer Care (Engl) %D 2007 Mar %N 2 %P 164-71 %T Special considerations for haematology patients in relation to end-of-life care: Australian findings %V 16 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371426 %X Recent haematology clinical guidelines recommend that palliative care specialists should have central roles in haemato-oncology teams. However, the available research evidence indicates there are presently significant obstacles to the integration of palliative care in haematology. The following discussion presents findings from an Australian study designed to address the problems associated with lack of referral of haematology patients to the palliative system through the development of a best-practice model for end-of-life care for these diagnostic groups. The preliminary step in the development of such a model is to document the factors that denote the special characteristics of the end-of-life stage of haematological conditions and their treatments. This article presents the list of special considerations from a nursing perspective, including issues associated with the high-tech nature of treatments, the speed of change to a terminal event, the need for blood products and possibility of catastrophic bleeds, the therapeutic optimism based on a myriad of treatment options and the clinical indices of the terminal trajectory. The nursing insights provide an important foundation for building a practical, patient-centred model for terminal care in haematology %0 Journal Article %C Centre for Cancer Education, Department of Medical Oncology, University of Newcastle upon Tyne, Newcastle upon Tyne, UK %A Dark, G G %A Perrett, R %J Eur J Cancer Care (Engl) %D 2007 Mar %N 2 %P 100 %T Practice development - Part 1: developing a practice initiative in oncology and palliative care %V 16 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371417 %0 Journal Article %C California Hospital Family Medicine Residency Program, University of Southern California 90015-3011, USA %A Kalantari, Gita %A Zamudio, Anthony %J Fam Med %D 2006 Nov-Dec %N 10 %P 700-1 %T An "uneventful" pregnancy %V 38 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17075741 %0 Journal Article %C Department of Gynecologic Cancer, Westmead Hospital, Westmead, and Department of Psychological Medicine, University of Sydney, NSW 2006, Australia. khodgkinson@student.usyd.edu.au %A Hodgkinson, Katharine %A Butow, Phyllis %A Fuchs, Anne %A Hunt, Glenn E %A Stenlake, Annie %A Hobbs, Kim M %A Brand, Alison %A Wain, Gerard %J Gynecol Oncol %D 2007 Feb %N 2 %P 381-9 %T Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes %V 104 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17027072 %X OBJECTIVES: To assess the long-term psychosocial outcomes and supportive care needs of gynecologic cancer survivors. METHODS: Women who had received care in a tertiary-based gynecologic cancer center 1-8 years earlier and who were disease-free were invited to complete a mailed self-report questionnaire to assess psychosocial outcomes and supportive care needs. RESULTS: In total, 199 survivors participated in the study. Survivors reported normal quality of life and relationship adjustment although functioning was at the lower end of the range; over two-thirds (68%) reported positive outcomes. However, nearly one-third (29%) reported clinical levels of anxiety and the most frequently endorsed need concerned fear of disease recurrence (24%). About one-fifth (19%) reported symptoms that indicated posttraumatic stress disorder (PTSD) and this rose to close to one-third (29%) for survivors of advanced stage disease. Nearly 90% of survivors reported supportive care needs and the diagnosis of anxiety or PTSD resulted in a four-fold increase in unmet needs. Needs most frequently concerned "existential survivorship" (e.g., spiritual beliefs, decision making, the meaning of life) and "comprehensive cancer care" (e.g., team care, communication, local health care services). Years since diagnosis was not related to distress or need levels. CONCLUSIONS: All members of the care team need to be aware that significant psychosocial morbidity may occur many years after the successful treatment of a gynecologic malignancy and may be associated with elevated supportive care needs. Comprehensive and extended supportive care services are required to address anxiety and trauma responses and investigate strategies to meet ongoing needs in order to improve long-term psychosocial outcomes %0 Journal Article %A Pimlott, Ben %J Historian %D 2002 %N 76 %P 6-15 %T Jubilee and the idea of royalty %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17323542 %0 Journal Article %A Bankar, R N %A Latif, M F %A Kohnke, A A %A Dafe, C O %A Babu, P S %J Indian J Gastroenterol %D 2006 Nov-Dec %N 6 %P 323-4 %T Tracheal stent placement for airway obstruction due to esophageal stent %V 25 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17264445 %0 Journal Article %C Thomson West, USA %A Jones, Carol A %A Bercaw, Lawren E %J Issue Brief Health Policy Track Serv %D 2007 Jan %P 1-22 %T End-of-life issues: end-of-year issue brief %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17373040 %0 Journal Article %C Division of Pediatric Cardiology, Children's Hospital of Michigan, The Carman and Ann Adams Department of Pediatrics, Wayne State University, Detroit, Michigan 48201, USA. ssanjeev@dmc.org %A Aggarwal, Sanjeev %A Garekar, Swati %A Forbes, Thomas J %A Turner, Daniel R %J J Am Coll Cardiol %D 2007 Jan %N 4 %P 480-4 %T Is stent placement effective for palliation of right ventricle to pulmonary artery conduit stenosis? %V 49 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17258094 %X OBJECTIVES: This study was designed to evaluate the outcome of stent placement (SP) for conduit discrete stenosis using predefined criteria. BACKGROUND: Right ventricle (RV) to pulmonary artery (PA) conduits are often associated with complications, such as stenosis, requiring multiple surgical replacements. METHODS: Patients who underwent primary or repeat SP were included. Indications for SP were clinical symptoms and/or RV to systolic blood pressure (SBP) ratio (RV:SBP) >0.65 by echocardiography. Our definition of success was a decrease in RV:SBP by >20%, a final RV:SBP ratio of <0.65, or resolution of symptoms. RESULTS: Stents were placed successfully in 28 of 31 patients (90%), including 3 patients who underwent the procedure solely for symptoms. The RV:SBP ratio decreased (0.75 ± 0.17 vs. 0.52 ± 0.12, p < 0.001), and the conduit diameter increased (postero-anterior 9.1 ± 2.9 vs. 12.0 ± 2.8 mm, lateral 8.3 ± 2.2 vs. 11.6 ± 2.4 mm, p < 0.001). In the 28 patients with successful SP, 8 (29%) remained free from second intervention. In the remaining patients, the median time to re-intervention was 16 months (range 6 to 44 months). Second transcatheter interventions (4 SP, 4 balloon dilation) were successful in 8 of 13 patients. Complications included balloon rupture (n = 4), stent fracture (n = 2), and pseudoaneurysm formation (n = 1). CONCLUSIONS: Initial SP has excellent intermediate outcomes, successfully postponing surgical intervention for the majority of patients. Conduit restenosis may be successfully treated with a second transcatheter intervention. On the basis of these data, SP is likely the procedure of choice for patients with a discrete stenosis of the RV to PA conduit %0 Journal Article %A Talbott, John A %J J Cancer Educ %D 2006 Fall %N 3 %P 118-22 %T Professionalism: why now, what is it, how do we do something? %V 21 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17371171 %X Background: The subjects of professionalism and medical humanism are of concern to all medical schools in the United States as well as the object of numerous reports and scientific papers. Method: In this contribution, I discuss the following: Why is this necessary now and at the University of Maryland? What is and is not professionalism? How do we do something about the current situation, specifically in the selection of students, teaching, and evaluation of professionalism; remediation of unprofessional behavior, and rewarding exemplary behavior? Results and Conclusion: I make specific reference to our focus on end-of-life care, pain and palliation, breaking bad news, and death and dying %0 Journal Article %C Center for Bioethics, University of Minnesota, N504 Boynton, 410 Church Street S.E., Minneapolis, MN, 55455, USA %A Song, John %A Bartels, Dianne M %A Ratner, Edward R %A Alderton, Lucy %A Hudson, Brenda %A Ahluwalia, Jasjit S %J J Gen Intern Med %D 2007 Apr %N 4 %P 435-41 %T Dying on the Streets: Homeless Persons' Concerns and Desires about End of Life Care %V 22 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17372789 %X BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved. OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged. CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised %0 Journal Article %C Center for Bioethics, University of Minnesota, N504 Boynton Hall, 410 Church Street S.E., Minneapolis, MN, 55455, USA %A Song, John %A Ratner, Edward R %A Bartels, Dianne M %A Alderton, Lucy %A Hudson, Brenda %A Ahluwalia, Jasjit S %J J Gen Intern Med %D 2007 Apr %N 4 %P 427-34 %T Experiences with and attitudes toward death and dying among homeless persons %V 22 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17372788 %X BACKGROUND: Homeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population. OBJECTIVE: To explore the experiences and attitudes toward death and dying among homeless persons. DESIGN: Qualitative study utilizing focus groups. PARTICIPANTS: Fifty-three homeless persons recruited from homeless service agencies. MEASUREMENTS: In-depth interviews, which were audiotaped and transcribed. RESULTS: We present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants' attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL. CONCLUSIONS: Findings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised %0 Journal Article %C Department of Sociology and Center for Demography of Health and Aging, University of Wisconsin-Madison, 1180 Observatory Drive., Madison, WI 53706. carr@ssc.wisc.edu %A Carr, Deborah %A Khodyakov, Dmitry %J J Gerontol B Psychol Sci Soc Sci %D 2007 Mar %N 2 %P S135-41 %T End-of-Life Health Care Planning Among Young-Old Adults: An Assessment of Psychosocial Influences %V 62 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17379683 %X OBJECTIVE: . End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices. Methods. Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N = 3,838). RESULT: . Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and recent experience with the painful death of a loved one all influence end-of-life preparations. Consistent with past studies, we also found that education, gender, marital status, and religious affiliation affect end-of-life planning. Discussion. Health care providers may encourage end-of-life preparations by assuaging patients' death anxiety and fostering decision-making autonomy. Initiating discussions about recent deaths of loved ones may be an effective way to trigger patients' own end-of-life preparations %0 Journal Article %C Cardiac Arrhythmia Service, Brigham and Women's Hospital, Boston, MA, 02115, USA, mosweeney@partners.org %A Field, ME %A Sweeney, MO %J J Interv Card Electrophysiol %D 2007 Mar %T Socio-economic analysis of cardiac resynchronization therapy %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17372813 %X The field of electrical device therapy has benefited from two basically independent lines of investigation demonstrating mortal benefit from either cardiac resynchronization therapy (CRT) or implantable cardioverter-defibillator (ICD) therapy in patients with heart failure. Current clinical evidence data is insufficient to conclude that CRT-defibrillation (CRTD) offers an advantage over CRT-pacing (CRTP) alone. The cost of adding a defibrillator to the CRTP device is substantial and will act as a barrier to wide scale penetration. Annualized sudden death rates are very low in certain primary prevention populations. Consequently, the potential for overtreatment is very large and the negative costs of ICD therapy are distributed equally among those patients who will have a life saving benefit and those who were "destined" never to require the therapy. The perception that these costs are acceptable if lives are saved is commonly cited as justification for expensive therapy on a population scale, but there is an important and practical difference between costs per unit life saved and costs among patients who really never needed the device. Until the a priori predictors of volumetric response to CRT are better understood, the use of CRTD in class IV patients should be discouraged since ICD therapy is unlikely to extend life in volumetric non-responders. Similarly, the use of CRTD in patients who are "destined" for significant volumetric response is probably unwise since their risk of sudden death is minimized due to favorable substrate modification. Clinical trials comparing conventional ICDs, CRTP and CRTD are necessary to rationalize use of expensive hardware resources among different patient populations. Additionally, the importance of patient preference regarding end of life care should receive greater emphasis. While CRTP may be considered palliative in terminal heart failure, the decision to offer CRTD must include a discussion with the patient regarding mode of death and the potential for the defibrillator to replace a sudden and peaceful death with a prolonged death from progressive pump failure %0 Journal Article %C Mercy Hospital for Women, PO Box 5027, Heidelberg West, Victoria 3081, Australia. dwilkinson@mercy.com.au %A Wilkinson, D %J J Med Ethics %D 2006 Aug %N 8 %P 454-9 %T Is it in the best interests of an intellectually disabled infant to die? %V 32 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=16877624 %X One of the most contentious ethical issues in the neonatal intensive care unit is the withdrawal of life-sustaining treatment from infants who may otherwise survive. In practice, one of the most important factors influencing this decision is the prediction that the infant will be severely intellectually disabled. Most professional guidelines suggest that decisions should be made on the basis of the best interests of the infant. It is, however, not clear how intellectual disability affects those interests. Why should intellectual disability be more important than physical disability to the future interests of an infant? Is it discriminatory to base decisions on this? This paper will try to unravel the above questions. It seems that if intellectual disability does affect the best interests of the child it must do so in one of three ways. These possibilities will be discussed as well as the major challenges to the notion that intellectual disability should have a role in such decisions. The best interests of the child can be affected by severe or profound intellectual disability. It is, though, not as clear-cut as some might expect %0 Journal Article %C Department of Nursing, Fooyin University %A Lee, Feng-Ping %A Leppa, Carol %A Schepp, Karen %J J Nurs Res %D 2006 Dec %N 4 %P 286-96 %T Using the Minimum Data Set to determine predictors of terminal restlessness among nursing home residents %V 14 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17345758 %X The aim of this study was to determine predictive variables of terminal restlessness that were selected from the Minimum Data Set (MDS) among nursing home residents. A descriptive, cross-sectional design was used to retrospectively review decedents' Minimum Data Set records. Four independent variables from the MDS (distressed mood, problem conditions, pain, and medications) were examined as to whether they were predictive variables of terminal restlessness by utilizing path analysis statistical method. Residents from a nursing home located in the northwestern United States who died during 2000 and 2001, had at least one MDS record and no comatose in their MDS cognitive patterns were selected. A total of 84 decedents' records were consequently recruited for use in this study. A path analysis result showed (a) 44.6% of the variance in distressed mood is predicted by two variables: problem conditions (beta = .557) and pain (beta = .193) and (b) 34% of the variance in terminal restlessness is predicted by two variables: pain (beta = .370) and distressed mood (beta = .313). Results indicate that residents who (a) had more problem conditions and more pain are more likely to have distressed moods and (b) experienced more pain and had more distressed moods have a higher incidence of terminal restlessness. These findings provide important and valuable clinical implications. A careful evaluation of pain is necessary, especially as many elders are not able to communicate well during the terminal phase of their lives. How to access residents' moods and provide appropriate and immediate interventions, comfort, and even just being there for them are imperative for nursing home care providers %0 Journal Article %C Southeastern Health Regional Observatory, (ORS-PACA), Marseilles, France %A Bendiane, Marc Karim %A Bouhnik, Anne-Deborah %A Favre, Roger %A Galinier, Anne %A Obadia, Yolande %A Moatti, Jean-Paul %A Peretti-Watel, Patrick %J J Opioid Manag %D 2007 Jan-Feb %N 1 %P 21-6 %T Morphine prescription in end-of-life care and euthanasia: French home nurses' opinions %V 3 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17367091 %X OBJECTIVE: This study aimed to investigate factors that might lead French homecare nurses to consider the prescription of high-dose morphine to terminally ill patients to be euthanasia. METHODS: The researchers conducted an anonymous telephone survey among a random sample of 602 French homecare nurses (response rate = 75 percent) in 2005. RESULTS: Overall, 27 percent of responding home nurses considered prescribing high-dose morphine to terminally ill patients to be euthanasia. Such an opinion was more frequently held by older nurses, those who had not followed terminally ill patients during the previous three years, and those with less knowledge about pain management involving opioid analgesics. CONCLUSION: There is an urgent need to strengthen pain management education among French homecare nurses--especially regarding the use of morphine--in order to both improve their technical skills and correct some misconceptions about opioid analgesics %0 Journal Article %C [1] 1Department of Family Medicine, University of Michigan Health System, Ann Arbor, MI, USA [2] 2Department of Internal Medicine, Robert Wood Johnson Clinical Scholars Program, University of Michigan Health System, Ann Arbor, MI, USA %A Gold, K J %J J Perinatol %D 2007 Apr %N 4 %P 230-7 %T Navigating care after a baby dies: a systematic review of parent experiences with health providers %V 27 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17377604 %X Introduction:Health care providers are on the front lines of care when a baby dies, but there is no consensus about which behaviors are most helpful or harmful for families.Materials and Methods:This systematic review of more than 1100 English-language articles from 1966 to 2006 addressed fetal and early infant loss and extracted information about interactions with health providers.Results:Sixty-one studies, covering over 6000 parents, met criteria. Nurses were generally viewed as more emotionally supportive than physicians. Parents valued emotional support, attention to mother and baby and grief education. Avoidance, insensitivity and poor staff communication were the most distressing behaviors encountered.Discussion:Interactions with health providers has profound effects on parents with perinatal losses. Grieving parents perceive many behaviors to be thoughtless or insensitive. Physicians and nurses may benefit from increased training in bereavement support.Journal of Perinatology (2007) 27, 230-237. doi:10.1038/sj.jp.7211676 %0 Journal Article %A Bower, Carol E %J JAMA %D 2007 Mar %N 11 %P 1194; author reply 1194-5 %T Frail older adults and palliative care %V 297 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17374813 %0 Journal Article %A Cormican, Daniel %A Seidman, Peggy A %J JAMA %D 2007 Mar %N 11 %P 1194; author reply 1194-5 %T Frail older adults and palliative care %V 297 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17374812 %0 Journal Article %A Finucane, Thomas E %J JAMA %D 2007 Mar %N 11 %P 1193-4; author reply 1194-5 %T Frail older adults and palliative care %V 297 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17374811 %0 Journal Article %C Inova Alexandria Hospital, VA, USA. orphaw@hotmail.com %A Weinhold, Orpha %J MCN Am J Matern Child Nurs %D 2007 Jan-Feb %N 1 %P 30-5 %T Development of the Perinatal Concerns Program: care of mothers after diagnosis of fatal infant anomalies %V 32 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17308455 %X Care of the grieving mother in the labor and delivery setting is a complex phenomenon requiring collaboration of professionals and designing sensitive care based on theory and compassion. This article describes The Perinatal Concerns Program, which was developed to make available a complete range of care for women whose pregnancies are complicated by fetal abnormalities. Development of this program required collaboration of several services, coordination of protocols, and establishment of clear lines of communication. It was born after a particularly difficult case in labor and delivery that alerted a staff nurse to the fact that coordination of care for this patient could have resulted in enhanced ability of all the staff to meet this woman's physical and emotional needs. The development of this program demonstrates that a motivated staff nurse with effective leadership skills can make major changes in an institution which can make a difference in the care of grieving patients %0 Journal Article %C International Medical University Malaysia, Jalan Rasah, Seremban 70300, Malaysia. kengyin_loh@imu.edu.my %A Loh, K Y %A Kwa, S K %A Nurjahan, M I %J Med Educ %D 2006 Nov %N 11 %P 1131-2 %T Palliative medicine as an elective posting for undergraduates %V 40 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17054631 %0 Journal Article %C Academisch Medisch Centrum/Universiteit van Amsterdam, afd. Huisartsgeneeskunde, divisie Klinische Methoden en Public Health, Amsterdam. annawestra@yahoo.com %A Westra, A E %A Smit, B J %A Willems, D L %J Ned Tijdschr Geneeskd %D 2007 Feb %N 8 %P 449-52 %T [Withholding treatment in terminally-ill newborns with Islamic parents] %V 151 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17378297 %X End-of-life decisions for terminally-ill newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Paediatricians, while acting in accordance with the principle of respecting the autonomy of the parents, may collide with their own motive of avoiding pointless suffering of the infant. Based on their religious beliefs Islamic parents may not consent to an end-of-life decision. Three newborn girls who eventually died had been suffering from a skeletal dysplasia and a serious bronchopulmonary dysplasia, serious intractable deterioration after surgery for necrotising enterocolitis, and trisomy 18 respectively. In the first two cases there was no preceding consensus between parents and physicians and the girls died after more suffering than the paediatrician found acceptable. The physicians should aspire to prevent conflict situations by paying sufficient attention to the differences in beliefs. This demands that physicians understand and respect different beliefs and that they are able to communicate on the subject of these differences. It is important to Islamic parents that the natural course allows Allah to exercise his authority over life and death, and human dignity. Doing the best for the child is often more important than respect for patient or parent autonomy %0 Journal Article %C Department of Human Genetics, Mount Sinai School of Medicine of New York University, Fifth Avenue and 100th Street, New York, NY 10029, USA. robert.desnick@mssm.edu %A Desnick, Robert J %A Banikazemi, Maryam %J Nephrol Ther %D 2006 Jan %P S172-85 %T Fabry disease: clinical spectrum and evidence-based enzyme replacement therapy %V 2 Suppl 2 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17373219 %X The clinical spectrum of Fabry disease, an X-linked lysosomal storage disorder due to alpha-galactosidase A (alpha-Gal A) deficiency, has been expanded beyond the classic phenotype to include the recently recognized later-onset "cardiac" and "renal" variants. The clinical manifestations in each of these disease subtypes are presented with particular emphasis on early recognition among pediatric patients as well as identification of unrecognized patients diagnosed as hypertrophic cardiomyopathy or in renal dialysis clinics. Previously, treatment of patients with Fabry disease was limited to palliative care of the excruciating pain, cardiac and cerebrovascular manifestations, and renal failure. Recently, Fabry-specific enzyme replacement therapy (ERT) with recombinant alpha-Gal A (Fabrazyme) has proven safe and effective. The preclinical, Phase 1/2 and multicenter, double-blind, randomized, placebo-controlled Phase 3 and 4 trials provided the evidence for the safety and efficacy of Fabrazyme treatment. The preclinical and Phase 1/2 studies demonstrated that enzyme delivery to various tissues and GL-3 clearance were dose-dependent. The Phase 3 clinical trial and 3-year extension study provided long-term data documenting the safety and effectiveness of 1 mg/kg of Fabrazyme for this disease. Finally, the "top-line" data from the Phase 4 trial indicates that in patients with mildly to moderately advanced renal disease, Fabrazyme can slow the progression of renal, cardiac, and cerebrovascular events taken together or individually. The Phase 4 trial results also emphasize the importance of early treatment. In sum, these clinical trials provide the evidence-based safety and efficacy of Fabrazyme replacement therapy for Fabry disease %0 Journal Article %C Department of Neurology, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA. sorenson.eric@mayo.edu %A Sorenson, Eric J %A Mandrekar, Jayawant %A Crum, Brian %A Stevens, J Clarke %J Neurology %D 2007 Feb %N 8 %P 600-2 %T Effect of referral bias on assessing survival in ALS %V 68 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17310031 %X We assessed the effect of referral bias on patients with ALS treated at our medical center. A total of 132 subjects were treated by our center over the past 3 years. The referral population had a median survival of 29 months compared to 18 months for the local population (p = 0.007). Referral bias should be addressed when assessing the efficacy of self-selected therapies in the setting of a tertiary ALS clinic %0 Journal Article %C Department of Medical Oncology, Centre Alexis Vautrin, Vandoeuvre-les-Nancy, France. t.conroy@nancy.fnclcc.fr %A Conroy, Thierry %A Marchal, Frederic %A Blazeby, Jane M %J Oncology %D 2006 %N 6 %P 391-402 %T Quality of life in patients with oesophageal and gastric cancer: an overview %V 70 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17259744 %X An accurate assessment of health-related quality of life (QoL) in patients with oesophageal or gastric cancer (OGC) is essential to inform clinical decisions by providing insights into patients' experiences of the impact of the disease and its treatments on physical, social and emotional health. Robust QoL questionnaires have been developed and validated in the past decade to measure the QoL of OGC patients. Baseline QoL variables are also prognostic for survival in patients with oesophageal cancer or metastatic gastric cancer. This article reviews the impact of surgery and reconstructive techniques, as well as of adjuvant and palliative treatments on the QoL of patients with OGC %0 Journal Article %C Department of Hematology and Oncology, Krankenhaus Nordwest, Frankfurt/M., Germany. albatran@aol.com %A Al-Batran, Salah-Eddin %A Kerber, Anne %A Atmaca, Akin %A Dechow, Claudius %A Reitsamer, Ernst %A Schmidt, Sebastian %A Kolassa, Yvonne %A Neumann, Antje %A Weidmann, Eckhart %A Hartmann, Joerg Thomas %A Jager, Elke %J Onkologie %D 2007 Feb %N 1-2 %P 29-34 %T Mitomycin C, 5-fluorouracil, leucovorin, and oxaliplatin as a salvage therapy for patients with cisplatin-resistant advanced gastric cancer: a phase I dose escalation trial %V 30 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17264523 %X BACKGROUND: This study aimed at evaluating the feasibility and toxicity of a salvage therapy with mitomycin C (MMC), 5-fluorouracil (5-FU), leucovorin, and oxaliplatin in patients with cisplatin-resistant advanced gastric cancer. METHODS: A 3-patient cohort dose-escalating study design was used. The patients received FLO: oxaliplatin 85 mg/m2, 5-FU 2,600 mg/m2 (24 h), leucovorin 200 mg/m2 on days 1, 15, and 29 plus MMC on day 1 (FLOM). The MMC dose was escalated from 6 to 12 mg/m2 in 2- mg/m2 steps. Cycles were repeated every 6 weeks. RESULTS: Twenty patients were enrolled in 4 treatment cohorts. The treatment was well tolerated with grade 3 or 4 nonhematological toxicities affecting less than 5% of patients. Grade 3 or 4 neutropenia, anemia, and thrombocytopenia were observed in 9 (45%), 7 (35%), and 5 (25%) of 20 patients, respectively. Mild but prolonged thrombocytopenia was dose limiting, requiring treatment discontinuation or a treatment delay >or=2 weeks in 8 (40%) of 20 patients. MMC 10 mg/m2 every 6 weeks was considered as the optimal dose in combination with FLO. Objective responses were observed in 7 (35%) of 20 patients, and 7 further patients (35%) had stable disease. Median time to progression and overall survival were 4.1 and 8 months, respectively. CONCLUSIONS: Prolonged cumulative myelotoxicity was dose limiting in the therapy with MMC, 5-FU, and oxaliplatin. This combination chemotherapy seems to overcome cisplatin resistance in patients with advanced gastric cancer %0 Journal Article %C Department of Health Care Ethics and Philosophy, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands. m.goldsteen@zw.unimaas.nl %A Goldsteen, Minke %A Houtepen, Rob %A Proot, Ireen M %A Abu-Saad, Huda Huijer %A Spreeuwenberg, Cor %A Widdershoven, Guy %J Patient Educ Couns %D 2006 Dec %N 1-3 %P 378-86 %T What is a good death? Terminally ill patients dealing with normative expectations around death and dying %V 64 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=16872786 %X OBJECTIVE: Developing good care for dying people is important nowadays. Normative expectations about what could be considered as a good death are inextricably bound up with this issue. This article aims to offer an insight in the way terminally ill patients talk about death and dying and how they refer to current western normative expectations about a 'good' death. METHOD: Thirteen patients with a life expectancy of less than 3 months living at home were interviewed about how they experienced the last phase of their lives. The analysis focused on the way patients tell their personal stories by using normative expectations that are part of a broader cultural western framework. RESULTS: Five categories of normative expectations were discriminated in the stories of patients: awareness and acceptance, open communication, living one's life till the end, taking care of one's final responsibilities and dealing adequately with emotions. CONCLUSIONS: The results of this study show that in the search of a good death people show a clear diversity in their way of referring to as well as in dealing with normative expectations that are part of the current cultural paradigm. PRACTICE IMPLICATIONS: Professional caregivers should be responsive to how a patient deals with and relates to normative expectations about a good death and should support patients in their individual process of dying an 'appropriate death' %0 Journal Article %C Northwestern University Medical School, 530 Winnetka Avenue, Winnetka, IL, USA. r-magrisso@northwestern.edu %A Magrisso, Robert M %J Patient Educ Couns %D 2006 Dec %N 1-3 %P 3-5 %T Butterfly woman %V 64 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=16859869 %0 Journal Article %A Bell, Edward F %J Pediatrics %D 2007 Feb %N 2 %P 401-3 %T Noninitiation or withdrawal of intensive care for high-risk newborns %V 119 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17272630 %X Advances in medical technology have led to dilemmas in initiation and withdrawal of intensive care of newborn infants with a very poor prognosis. Physicians and parents together must make difficult decisions guided by their understanding of the child's best interest. The foundation for these decisions consists of several key elements: (1) direct and open communication between the health care team and the parents of the child with regard to the medical status, prognosis, and treatment options; (2) inclusion of the parents as active participants in the decision process; (3) continuation of comfort care even when intensive care is not being provided; and (4) treatment decisions that are guided primarily by the best interest of the child %0 Journal Article %C Department of Bioresources Engineering, University of Delaware, Newark, Delaware 19716, USA. ebenson@udel.edu %A Benson, E %A Malone, G W %A Alphin, R L %A Dawson, M D %A Pope, C R %A Van Wicklen, G L %J Poult Sci %D 2007 Feb %N 2 %P 219-24 %T Foam-based mass emergency depopulation of floor-reared meat-type poultry operations %V 86 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17234833 %X Current control strategies for avian influenza and other highly contagious poultry diseases often include quarantine, depopulation, and disposal of infected birds. For biosecurity reasons, on-farm depopulation and disposal methods are preferred. The options for mass depopulation are limited, as reported by the "2000 Report of the AVMA Panel on Euthanasia." Current depopulation techniques may have excessive labor requirements, are not appropriate for all house types, and may not be suitable for large-scale emergency implementation. A procedure has been developed that uses foam to rapidly form a blanket over the birds. The procedure requires relatively few people, can be performed in a variety of house types, and is compatible with in-house composting. Results from 2 experiments using foam for depopulation are presented in this paper. These studies have shown that foams are comparable to the CO(2) polyethylene tent procedure in time to death in small groups and that the foam is faster as group size increases. Adding CO(2) to the foam does not enhance its efficacy. Based on corticosterone levels, the study also showed that the foams are no more stressful than the CO(2) depopulation method. Necropsy and histological examination of birds indicated that blood was present to some degree in the trachea, syrinx, and bronchial tree in broilers subjected to foam with CO(2), foam without CO(2), and CO(2) polyethylene tent methods of depopulation. Foam caused a rapid onset of airway occlusion. In both foam- and CO(2)-euthanized broilers, lesions are consistent with anoxia or hypoxia. This suggests that foam acts by physically induced hypoxia, whereas CO(2) causes chemically induced hypoxia %0 Journal Article %C Department of Animal Health, Welfare and Nutrition, Danish Institute of Agricultural Sciences, Foulum, Denmark. anneb.kudahl@agrsci.gk %A Kudahl, Anne Braad %A Sorensen, Jan Tind %A Nielsen, Soren Saxmose %A Ostergaard, Soren %J Prev Vet Med %D 2007 Feb %N 2 %P 118-29 %T Simulated economic effects of improving the sensitivity of a diagnostic test in paratuberculosis control %V 78 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17101188 %X Low sensitivity (Se) of diagnostic tools is often mentioned as a major problem in the control of paratuberculosis (PTB) and much effort is put into the improvement of these tests. The hypothetical perspectives of improving the Se of a milk-antibody ELISA (hereafter: milk-ELISA) used in test-&-cull strategies against PTB in dairy cattle were investigated by simulations. The current Se varies between 10 and 80%, increasing with increasing lactation stage, parity and infection stage. We simulated the effects on a dairy herd's production of improving this Se to 80% (independent of these factors) and assumed no concomitant decrease in specificity. By using a PTB model called PTB-Simherd, 12 scenarios were simulated to study three test-&-cull strategies in each of four herds with 200 dairy cows. To show the maximal effect of using test-&-cull with such an improved test we simulated three strategies: (1) no testing, (2) testing with milk-ELISA test with the current Se and culling of positive cows immediately and (3) testing with milk-ELISA test with a Se improved to 80% and culling positive cows immediately. The four herds were defined by a moderate (25%) or high (80%) initial true within-herd prevalence (including young stock), and a poor or good heat-detection success of 40 or 60%. We assumed that these factors influenced the effects of improving the Se of the milk-ELISA. Management both concerning calf management and in general was specified to represent a typical Danish herd. Using an improved milk-ELISA was predicted to reduce the prevalence of PTB more effectively than the current ELISA, and over 10 years bring the production of a herd with moderate initial prevalence up to a production level comparable to a non-infected herd (unlike if the current ELISA had been used). In a herd with high initial prevalence (80%) milk production was increased more by using the improved milk-ELISA, but after 10 years the replacement rate was still very high causing problems with having enough recruitment animals-especially in high-prevalence herds with poor reproductive performance. Economically important measurements in all four herds benefited from the improvement of the test over a 10-year period. However, in the first 3-5 years the improved test would be more expensive to use than the current test, due to increased replacement (reduced net annual revenue per cow euro15 on average) but after that, net annual revenue increased continuously; after 10 years it was euro70-90 higher, than if the current milk-ELISA was used. Also, the milk-ELISA test with its current Se seemed to be profitable already after 2 years in high-prevalence herds using a test-&-cull strategy based on the milk-ELISA alone %0 Journal Article %C Katedra i Klinika Nefrologii, Collegium Medicum, Uniwersytetu Jagiellornskiego w Krakowie. aradziszewski@wp.pl %A Radziszewski, Andrzej %A Stompor, Tomasz %A Gajda, Mariusz %A Sulowicz, Wladyslaw %J Przegl Lek %D 2006 %N 7 %P 597-601 %T [Ethical and legal issues concerning renal replacement therapy withdrawal or withholding] %V 63 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17203817 %X Rapid and dynamic increase of the number of patients that need different forms of renal replacement therapy can be noticed in the developed countries. This increase is associated with increased number of patients with 'diseases of modern civilization', such as diabetes and hypertension, which lead to kidney complications (e.g. diabetic and hypertensive nephropathy). Improved long-term care (especially diabetic and cardiologic) allows these patients to survive longer and to reach the stage of end-stage renal disease. This leads to increasing age and morbidity of patients treated with dialysis. In many cases, due to extremely advanced level of co-morbidity patients on dialysis are exposed to extreme level of suffering and unacceptably low quality of life. Persistent continuing of renal replacement therapy under such circumstances (with no hope for recovery or improvement) raises also some economical issues, especially in the context of permanent crisis and shortage of resources in health systems of most countries in the world. In this review the current practice concerning withdrawal or withholding of renal replacement therapy as well as some legal and ethical issues of this practice are discussed %0 Journal Article %C Health Economics & Outcomes Research, AstraZeneca R&D, and Department of Respiratory Medicine and Allergology, Lund University Hospital, 221 87, Sweden. fredrik.l.andersson@astrazeneca.com %A Andersson, Fredrik L %A Svensson, Klas %A Gerhardsson de Verdier, Maria %J Respir Med %D 2006 Aug %N 8 %P 1436-41 %T Hospital use for COPD patients during the last few years of their life %V 100 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=16343887 %X Little is known about what happens to COPD patients during their final years of life, in particular in terms of hospital use. We linked the Swedish Mortality and Inpatient Registers to examine this research question during the period 1987-2000. In year 2000, 2331 fatalities were diagnosed with COPD as the underlying cause of death. About 3% of individuals had not been admitted to hospital at all prior to their death, whereas 15% had never been admitted for COPD (but for other reasons). More than 68% of all COPD admissions and 74% of all days in hospital occurred in the 3.5 years before death, indicating longer stays closer to death. The last 6 months of life accounted for 22% and 28% of all COPD admissions and days, respectively. Other causes accounted for nearly 50% of all admissions, with a more limited increase during the final years. In conclusion, there is a very variable hospital use among these COPD patients. Use increases almost exponentially as the end approaches. Finally, COPD patients often have a number of concomittant diseases which may affect diagnosis and healthcare resource use. The economic and policy implications of these main findings need to be further examined %0 Journal Article %C FNCLCC (Federation nationale des centres de lutte contre le cancer), Centre regional de lutte contre le cancer Alexis-Vautrin, 54511 Vandceuvre-les-Nancy Cedex. i.krakowski@nancy.fnclcc.fr %A Krakowski, Ivan %A Colombat, Philippe %J Rev Prat %D 2006 Nov %N 18 %P 1987-8 %T [Supportive care for people affected by cancer. We all are concerned] %V 56 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17274499 %0 Journal Article %A Kral, Pavel %J Sb Pr Filos Fak Brnenske Univ Rada Hist %D 2002 %N 49 %P 71-86 %T [Ritual and ceremonial: funeral ceremonies in the courts of the nobility in the early modern period] %V 51 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17225363 %0 Journal Article %C Division of Surgery, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden. martin.sundelof@ds.se %A Sundelof, Martin %A Ringby, Daniel %A Stockeld, Dag %A Granstrom, Lars %A Jonas, Eduard %A Freedman, Jacob %J Scand J Gastroenterol %D 2007 Jan %N 1 %P 11-6 %T Palliative treatment of malignant dysphagia with self-expanding metal stents: a 12-year experience %V 42 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17190756 %X OBJECTIVE: The incidence of oesophageal cancer is increasing but the prognosis is still very poor. Around 50% of patients have advanced disease when diagnosed. Stenting using expandable metal stents is primarily aimed at palliation. The purpose of this study was to evaluate factors influencing morbidity, procedure-related mortality and symptom relief for dysphagia in patients with unresectable oesophageal cancer treated with self-expanding metal stents. MATERIAL AND METHODS: We conducted a retrospective observational clinical study of consecutive patients treated with self-expanding metal stents in the Department of Surgery, Danderyd Hospital, Sweden, between January 1993 and May 2005. RESULTS: One hundred and seventy-four stents were placed in 149 patients. The procedure-related mortality was 3% and the complication rate 26%. Pre- and post-treatment dysphagia could be evaluated in 139 stent placements, and showed significant improvement of dysphagia symptoms in 70% of subjects (p<0.0001). Tumour length, tumour location, histology, age, gender or prior dilatation did not affect the outcome regarding procedure-related morbidity or symptom relief. CONCLUSIONS: Palliation of malignant dysphagia with self-expanding metal stents is safe and confers almost immediate improvement of dysphagia in the majority of patients. Tumour-related and demographic factors do not seem to influence the outcome %0 Journal Article %A de Araujo Elias, Ana Catarina %A Giglio, Joel Sales %A de Mattos Pimenta, Cibele Andrucioli %A El-Dash, Linda Gentry %J ScientificWorldJournal %D 2006 %P 2158-69 %T Therapeutical Intervention, Relaxation, Mental Images, and Spirituality (RIME) for Spiritual Pain in Terminal Patients. A Training Program %V 6 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17370011 %X Therapeutic intervention involving the technique of Relaxation, Mental Images, and Spirituality (RIME) can foster the redefinition of spiritual pain in terminal patients. A training course was developed to instruct health care professionals in its use, and the results were followed up by evaluating reactions of professionals to its use in intervention with patients. Six subjects (a nurse, a doctor, three psychologists, and an alternative therapist), all skilled in palliative care, were invited to take part in the experience. They worked with 11 terminal patients in public hospitals of the cities of Campinas, Piracicaba, and Sao Paulo, located in Brazil. The theoretical basis for the study involves action research and phenomenology, and the results were analyzed using both qualitative and quantitative methods. The analysis of the experience of the professionals revealed 5 categories and 15 subcategories. The analysis of the nature of spiritual pain revealed 6 categories and 11 subcategories. The administration of RIME revealed statistically significant differences (p < 0.0001), i.e., patients reported a greater level of well-being at the end than at the beginning of sessions, which suggests that RIME led to the redefinition of spiritual pain for these terminal patients. The training program proposed has shown itself to be effective in preparing health care professionals for the use of RIME intervention %0 Journal Article %A Strikwerda, R %J Tijdschr Diergeneeskd %D 2007 Jan %N 1 %P 971 %T ['Castration of a pregnant cat' asks for a collective point of view] %V 132 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17334106 %0 Journal Article %A Donaldson, Alex %J Vet Rec %D 2007 Jan %N 1 %P 31 %T FMD and the contiguous cull %V 160 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17209097 %0 Journal Article %A Wingfield, Adrian %J Vet Rec %D 2007 Jan %N 1 %P 31-2 %T FMD and the contiguous cull %V 160 %W http://www.ncbi.nih.gov/entrez/query.fcgi?cmd=retrieve&db=pubmed&dopt=abstract&list_uids=17209096